INR self-testing resistance!

[irene75359]

Please note, I am not medically trained, and this isn't advice, just my account

MarkS helped me some months ago with his considerable knowledge about warfarin and INR. After a post of his some years ago I started K2 and have done daily (regular daily dose is most important) ever since. I enjoy more or less consistent INR levels unless I am unwell. I don't ever think about what I eat or drink.

Recently, I was called to the surgery to meet a pleasant new practice nurse, specifically to talk about my lack of attendance at the INR clinic. I explained that I self-test, that I am away a lot, and that I self-adjust. She looked a bit worried, and then I dropped in that I take K2. Her reaction was such I may as well have admitted to taking hard drugs. After a lecture, she gave me a date eight weeks away for the next test and I told her I would never leave it that long; I self-test every 14-20 days. She argued that I didn't need to and it could lead to over-adjustments. Eventually I was told that all she could do is warn me of the dangers but it was up to me.

She called a few days later as she was so concerned about my admission that she spoke to one of the doctors who now wants to see me to talk about it all. I am lucky to have such a proactive surgery and I can't fault the level of care. However!

I forgot about it all and didn't make an appointment. But my prescription renewal came up for review and I had to see one of the GPs. I went armed with up-to-date studies about the benefits of self-testing. He listened carefully, looked at my INR record, my minor, very occasional adjustments and told me he was happy with what I was doing. He even asked if I was trained in any medical discipline as I knew all the terminology - well that's only because of what I have learned on here!

Finally, if there any left on the forum who need persuading to self-isolate, please listen to the friend of my daughter and her husband - a very fit young man.

youtube.com/watch?v=t2JBQsJ...(Not working as expected?)

[Hidden]

Hiya Irene,

Your post was very interesting, and to a point almost mirrors my own experiences over the last 10 years. Like you, I have found MarkS contributions on here very, very worthwhile taking on board. Invaluable in fact !

When I was first diagnosed with AF I was living in east Surrey and my GP's practice was pretty much state of the art and my GP beyond excellent. So were the INR Clinic team at the same surgery, and when I went on Warfarin they bent over backwards to help me, to teach me and to encourage me to self test.

From that point on I acquired my own Coaguchek XS device and it has been part of my life ever since, even on my trips to Australia.

I have to admit I have really tried to learn as much as I can about not just AF but Warfarin too and the way it behaves, particularly in the context of diet. Yes, I self test, and yes I self adjust too. My INR is generally very stable, it chucks a wobbly every now and then for no real reason and my process for self adjusting is first of all I use my intake of green vegetables to do the job. If this doesn't work effectively I use guidelines from an algorithm and modify my Warfarin dose itself. One technique or the other always brings my INR back to the range where it should ideally be. And so life goes on.

I eventually moved to Cornwall in late 2012 and my local GP's practice that I first went to on arrival down here was like entering a nest of dinosaurs. When I asked them for their support in self testing they were horrified, told me directly they would not support this and insisted I complied with their policy of venous draw ! I went along with it and each test they did by this draw technique I crossed checked with my device. Now I already knew the INR readings wouldn't be the same due to technical reasons related to the source of the blood used in the testing techniques and the fact the venous draw blood was sent away for analysis. However, eventually a big time mistake was made, I challenged the Lead GP and got an admission of an error.

I then embarked on a phone around of local GP's practices and found one that supported the Coaguchek system and asked to join them. I was interviewed by one of the Lead GP's who eventually took me into the practice and he became my new GP. He was as near as you could get to Doc Martin ....Lol! So I moved from dinosaurs to Doc. Martin !! Never looked back.

So there we go ..... still on substance use (Warfarin) and self testing and enjoy a brilliant relationship with my GP, the INR clinic and nurse. Today I had to do my scheduled test and it came out at 3.0 and am now just waiting for a phone call telling me my new dose and new test date ..... no sweat there, I suspect all she will do is change around the days I take the various doses, often that's all it takes, change the Mg's and the days of the week.

John

[irene75359 in reply to Hidden]

Glad you eventually found a surgery that is supportive! I have nothing but praise for my surgery and they really are responsive, I just think the new nurse was being very thorough. However, I have read so much about INR and testing that dare I say it I probably knew more than her.

I am not consistent with any food at all since taking K2 and the only time I have variation is when I am unwell or have to take a course of other medication but I think that affects all warfarin users.

[Jalia]

Thanks Irene. As a warfarin user of 17 years and coaguchek tester for many years ( can't remember offhand..) I was very interested to read MarkS posts re K2 but haven't yet tested it ! I think at the time I was reluctant to increase my already hefty daily drug dose.

I'm impressed that you have also found it very useful.

I seem to be quite stable these days but will look into this again when normal service resumes !☺

Regards

J

[irene75359 in reply to Jalia]

Maybe head-in-the sand but I don't count K2 as one of my daily drugs intake. The benefits for me mean I have never even considered moving off warfarin because it doesn't cause me any problems. My major worry about changing would be that on the occasions I have missed a dose of warfarin it has barely affected my INR, whereas I would feel very vulnerable missing a tablet that has such a short period of protection.

PM me if I can help. Best wishes.

[Jalia in reply to irene75359]

Thanks Irene. I will PM you later.

[Auriculaire]

From what I have read about taking K2 when on Warfarin it is a stabilising factor and helps stop the variations in INR that diet can cause. Apart from anything else I always thought that it was K1 that was involve in the clotting cascade. I am not familier in any detail with the nutritional science behind this ( other than being aware that K2 helps calcium gp where it is needed ie bones and teeth and not where it is dangerous ie artery walls) and I suspect your nurse is not either and is repeating a mantra. The first time I was put on an anticoagulant it was a vit K antagonist and I asked the doctor on the cardiac ward who did my echo if Préviscan acted against K2 as well as K1. He hadn't a clue and it was quite obvious from his totally unsatisfactory reply that he did not even know there was more than one form of vit K! Either he had not learned this or was asleep for vitamin lecture.

[MarkS]

Hi Irene,

I'm glad you're getting on so well with your new practice, K2 and self testing. I don't think your new practice nurse has a clue. I think they're just taught the basics, which are often out of date, anyway, such as minimising Vit K intake.

I'm afraid I tell the nurses what they want to hear. I would not dare to tell them about the importance of a good steady Vit K intake let alone K2! The anticoag clinic also think I religiously follow their Warfarin dose, which I don't as I self-manage. I also self-test every week to 2 weeks rather than the 2 months on my email.

I hope there aren't any spies on this forum or I'm done for!

Mark

[irene75359 in reply to MarkS]

That made me laugh, Mark, keeping shtum was one thing you didn't tell me! I breezed in and spilt all the beans thinking I would get a clap on the back!

[MarkS in reply to irene75359]

...and got a clap on the head instead! 😂😂